DeSanto-Shinawi Syndrome is a rare neurodevelopmental genetic syndrome caused by variants in the WAC gene. The DESSH Foundation supports individuals and families affected by DeSanto–Shinawi Syndrome by uniting people around the world affected by DESSH, turning patient insights into meaningful research, and advancing the path towards treatments and better care.

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We steward our community’s data with purpose, support and fund research, and bring patients together—because every voice, every story, and every data point moves us closer to answers.